Advise for On-going pancreatitis

[Gabriel5000]

I’m a young 26 year that first experienced my first pancreatitis at 16. Now chronic pancreatitis- I have been living with phases of hospitalisations from severe acute pancreatitis attacks (more so when I was younger), currently ongoing constant pain, sometimes extremely severe, recently just on-going pain everyday for months. It is greatly impacting my quality of life and mental health. I am physically and mentally exhausted from dealing with this so frequently at such a young age when I’m trying to get my life going career wise and everything in between. I have been tested for everything and doctors have still to this day not been able to determine the cause. I do have a pseudocyst on my pancreas which they monitor. But no answer to me of how and why, adding to the frustration for me. Doctors, who have tested for everything basically just prescribe me pain meds and advise me to monitor my pain and that’s really all I’ve been given. If anyone has anyone advice or insight or help, anything could help.

Thank you

[golf53]

Have you been tested for hereditary pancreatitis? May be useful to know, but not likely to result in treatment. I assume you have had CT scans. CT should show whether your main duct is blocked. If so, you may benefit from stent therapy to open duct which could relieve symptoms. I would ask your doctor about this. Good luck.

[Roxiewendy]

Have you been tested for E.P.I. - Exocrine Pancreatic Insufficiency?

[Jackie1947]

This must be awful and worrying for you as a young person. My hospital Gastro dept has a lovely guy I can talk too. He's a physiologist not medical but I can tell him my fears,anxieties and helps me to get things into prospective. When pancreatitis was diagnosed with Diverticulitis I was shocked at the Pancreatitis. It's severe calcification. I don't drink alcohol so it's not that. I also have EPS and I am intolerant to the supplements. Around next March I'm due for my first follow up scan as 🤞 since the diagnosis I want to do as much as I can to live a full life as I never know what's around the corner. Having Rheumatoid arthritis in itself is a challenge. I guess I'm lucky as to date I haven't been hospitised. Have you got access to talking therapies? If so give it a go.

[Signingfun]

Research is being done to find treatments for chronic pancreatitis. Unfortunately, most of my treatment has been to treat pain, nausea, EPI and Type 3c Diabetes. Last year I went to Johns Hopkins Hospital where my pain prescription was changed from an Opioid to Gabapentin. I still have pain, but for the most part the pain is more manageable. I feel as though I have gotten some of my life back.

Do you have a pancreas specialist?

[Sapphire55]

Gabriel, I am so sorry for your difficult journey. I have read recently that PFAS can cause pancreatitis. If your mom lived or worked in areas where it was manufactured the exposure could be higher for her and you. PFAS are fluorinated hydrocarbons. I had higher than typical exposure based on my job and was diagnosed at about 63. I had no other risk factors.